People showing symptoms of endometriosis should be offered diagnosis options such as ultrasound so they receive treatment sooner, according to updated guidelines.
Endometriosis can take years to be diagnosed, as it has previously meant waiting for a surgical procedure to make the diagnosis.
The condition can cause severe pain, infertility and heavy periods – and occurs when cells similar to the lining of the uterus grow in other parts of the body. As well as women, endometriosis also affects other people with a uterus and a small number of men.
The living evidence guideline for endometriosis, published on Saturday by Royal Australian and New Zealand College of Obstetricians and Gynaecologists (Ranzcog), recommends that a transvaginal ultrasound be used as the first-line investigation or, if not appropriate, a pelvic MRI.
The recommendations are based on emerging evidence suggesting that a greater number of cases can be diagnosed with these non-invasive techniques with increasing accuracy.
The guideline replaces the first clinical practice guidelines published by Ranzcog in 2021. A “living” guideline means recommendations are updated based on the latest research and emerging evidence.
Historically, the gold standard of diagnosing endometriosis was to take tissue from a patient during an operation and review it under a microscope. But research from a variety of groups shows ultrasound can detect deep infiltrating endometriosis with “excellent” sensitivity, said Dr Marilla Druitt, a guideline developer.
However this method does have limitations to detect superficial disease, she said.
While a traditional ultrasound looks at uterus, tubes and ovaries, a new Medicare item number for an endometriosis ultrasound will become available from November which will look for endometriosis tissue in places outside the uterus, including the ligament that holds the uterus to the inside of someone’s pelvis.
“That Medicare item number will hopefully drive more thorough looking and more thorough assessment,” Druitt said. But in order for more patients with endometriosis to access it, more sonographers will need to gain accreditation, she said.
Offering ultrasound first to diagnose endometriosis means patients don’t have to endure long wait lists for surgery before they can start accessing treatments, whether for sub-fertility or persistent pain.
The guidelines recommend starting “with treatment and diagnosis in a parallel fashion, so there is absolutely no reason to delay treatment, which is the problem,” Druitt said.
The guidelines will also support GPs to begin first-line hormonal treatment while diagnostic investigations are under way, with primary care specific resources to improve access to key evidence-based recommendations.
Prof Danielle Mazza, the head of the department of general practice at Monash University and member of the guideline development group, said “having clear, evidence-based tools like the quick reference guide and flowchart will be a gamechanger for primary care”.
The guidelines also now recommend physiotherapy and psychology care as potentially useful for people with pelvic pain and endometriosis.
The updated guidelines also say that people with endometriosis requesting information about cancer risk in reproductive organs, should be informed “that although they may have a small increase in ovarian and endometrial cancer, the increase in absolute risk compared with women in the general population is low; and that they may have a reduced risk of cervical cancer”.
Druitt said many other inflammatory conditions, like Crohn’s or rheumatoid arthritis, are also associated with a slightly higher cancer risk, but when it comes to endometriosis “the fact that you need that massive data to be able to prove that association tells us something about the absolute risk is still pretty jolly small.”
New resources for patients have also been developed.
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Alexis Wolfe, consumer liaison on the guideline development group, said the resources will give people information that would help them advocate for themselves and participate more confidently in decision-making with care providers.
When it comes to the two different types of surgical treatments for endometriosis – ablation or excision – the guidelines state “existing evidence does not support one technique over the other, with the exception of endometrioma [cysts on the ovaries]” with the certainty of evidence being identified as “low”.
The guidelines strongly recommend excision rather than ablation to treat endometriomas.
Jess Taylor, the chair of peak body the Australian Coalition for Endometriosis (ACE), said having a living guideline was “critical” because endometriosis has a lot of new research activity. It was historically under-researched compared to other conditions, she said.
While supportive living guidelines for health professionals and patients, Taylor said it was disappointing Ranzcog did not allow open consultation to the public.
“We requested formal sector consultation … and we followed that up multiple times, and it’s disappointing that did not happen for a guide as important as this,” Taylor said.
A Ranzcog spokesperson said they “undertook sector consultation over a three-week period and extensions were granted where possible. The ACE requested a longer extension, which was not possible due to publication timelines.
The spokesperson said the timelines were made in agreement with the federal department of health who was the funder.
“We are now working with ACE and the Department of Health to ensure that ACE’s feedback can be incorporated into the next updates.”
Syl and Lesley Freedman, co-founders EndoActive, said the guidelines “reflect a deeper shift toward more inclusive, patient-centred care”.
“We are pleased to see clear recognition that hysterectomy is not a cure for endometriosis or adenomyosis,” the pair said in a joint statement.
“However, we are disappointed that the 2025 Guidelines still fail to state that pregnancy is not a cure or treatment for endo. This harmful myth continues to be perpetuated.”
